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upcoming
events

  • World AIDS Day
    World AIDS Day
    Mon, 01 Dec
    Online Platforms
    01 Dec 2025, 00:00 – 23:50
    Online Platforms
    World AIDS Day is observed on December 1 each year to raise awareness about HIV/AIDS, honor those who have died from the disease, and promote efforts to combat the epidemic.
  • Crohn’s and Colitis Awareness Week
    Crohn’s and Colitis Awareness Week
    Mon, 01 Dec
    01 Dec 2025, 00:00 – 07 Dec 2025, 23:50
    Online Platforms
    Crohn’s and Colitis Awareness Week is observed from December 1 to December 7 each year, aiming to educate about these common inflammatory bowel diseases and promote understanding and support.
  • National Grief Awareness Week
    National Grief Awareness Week
    Tue, 02 Dec
    Online Platforms
    02 Dec 2025, 00:00 – 08 Dec 2025, 23:50
    Online Platforms
    National Grief Awareness Week is observed annually from December 2nd to December 8th, aiming to raise awareness about grief and provide support for those affected by loss.
  • International Day of Persons with Disabilities
    International Day of Persons with Disabilities
    03 Dec 2025, 00:00 – 23:50
    Online Platforms
    The International Day of Persons with Disabilities is observed annually on December 3rd to promote the rights and well-being of persons with disabilities and to raise awareness about their situation in society.
  • Join our first annual Rare Year-End Engagement
    Join our first annual Rare Year-End Engagement
    10 Dec 2025, 19:00 – 20:00
    Microsoft Teams
    This year took a lot out of many of us. Before we jump into 2026 and start gearing up for Rare Disease Day, let’s share a moment together. We are not planning a big presentation, no heavy agenda. Just an honest check-in.
  • International Universal Health Coverage Day
    International Universal Health Coverage Day
    12 Dec 2025, 00:00 – 23:50
    Online Platforms
    International Universal Health Coverage Day aims to raise awareness of the need for strong and resilient health systems and universal health coverage with multi-stakeholder partners.
  • The Cape Town Cycle Tour - 2026
    The Cape Town Cycle Tour - 2026
    Sun, 08 Mar
    08 Mar 2026, 00:00 – 12:00
    Cape Town, Shop G13, Adderley St, Foreshore, Cape Town, 8001, South Africa
    Take on the iconic Cape Town Cycle Tour with purpose by joining #Ride4Rare. Experience breathtaking coastal views and the natural beauty of Cape Town’s world-famous route, all while using your passion and athletic ability to raise awareness and funds.
  • Totalsports Two Oceans Marathon - 2026
    Totalsports Two Oceans Marathon - 2026
    11 Apr 2026, 00:00 – 12 Apr 2026, 23:50
    Cape Town, 11 Main Rd, Newlands, Cape Town, 7700, South Africa
    Total Sports Two Oceans Marathon is an opportunity to use your mobility to benefit others - our rare diseases community! Sign up today to take part in the world's most beautiful marathon.

At Rare Diseases South Africa we place great value and emphasis on creating awareness, educating and sharing best practices amongst our network, our patients and society at large. We host a number of events throughout the year – some physical, some virtual and some hybrid – with the intention of ensuring that those we touch leave the session empowered with greater knowledge, empathy and understanding of rare diseases and congenital birth defects.

 

We also host regular community events and support our patient events as our priority is to ensure that no one affected by rare diseases has to walk this journey alone. Although individually rare, if we stand united, collectively we are powerful.

upcoming external fundraisers
  • World AIDS Day
    World AIDS Day
    Mon, 01 Dec
    Online Platforms
    01 Dec 2025, 00:00 – 23:50
    Online Platforms
    World AIDS Day is observed on December 1 each year to raise awareness about HIV/AIDS, honor those who have died from the disease, and promote efforts to combat the epidemic.
  • Crohn’s and Colitis Awareness Week
    Crohn’s and Colitis Awareness Week
    Mon, 01 Dec
    01 Dec 2025, 00:00 – 07 Dec 2025, 23:50
    Online Platforms
    Crohn’s and Colitis Awareness Week is observed from December 1 to December 7 each year, aiming to educate about these common inflammatory bowel diseases and promote understanding and support.
  • National Grief Awareness Week
    National Grief Awareness Week
    Tue, 02 Dec
    Online Platforms
    02 Dec 2025, 00:00 – 08 Dec 2025, 23:50
    Online Platforms
    National Grief Awareness Week is observed annually from December 2nd to December 8th, aiming to raise awareness about grief and provide support for those affected by loss.
  • International Day of Persons with Disabilities
    International Day of Persons with Disabilities
    03 Dec 2025, 00:00 – 23:50
    Online Platforms
    The International Day of Persons with Disabilities is observed annually on December 3rd to promote the rights and well-being of persons with disabilities and to raise awareness about their situation in society.
  • Join our first annual Rare Year-End Engagement
    Join our first annual Rare Year-End Engagement
    10 Dec 2025, 19:00 – 20:00
    Microsoft Teams
    This year took a lot out of many of us. Before we jump into 2026 and start gearing up for Rare Disease Day, let’s share a moment together. We are not planning a big presentation, no heavy agenda. Just an honest check-in.
  • International Universal Health Coverage Day
    International Universal Health Coverage Day
    12 Dec 2025, 00:00 – 23:50
    Online Platforms
    International Universal Health Coverage Day aims to raise awareness of the need for strong and resilient health systems and universal health coverage with multi-stakeholder partners.
  • The Cape Town Cycle Tour - 2026
    The Cape Town Cycle Tour - 2026
    08 Mar 2026, 00:00 – 12:00
    Cape Town, Shop G13, Adderley St, Foreshore, Cape Town, 8001, South Africa
    Take on the iconic Cape Town Cycle Tour with purpose by joining #Ride4Rare. Experience breathtaking coastal views and the natural beauty of Cape Town’s world-famous route, all while using your passion and athletic ability to raise awareness and funds.
  • Totalsports Two Oceans Marathon - 2026
    Totalsports Two Oceans Marathon - 2026
    11 Apr 2026, 00:00 – 12 Apr 2026, 23:50
    Cape Town, 11 Main Rd, Newlands, Cape Town, 7700, South Africa
    Total Sports Two Oceans Marathon is an opportunity to use your mobility to benefit others - our rare diseases community! Sign up today to take part in the world's most beautiful marathon.

patient events

If you’d like to register for or participate in patient specific events hosted by family, friends and/or support groups, contact us.

  • World AIDS Day
    World AIDS Day
    Mon, 01 Dec
    Online Platforms
    01 Dec 2025, 00:00 – 23:50
    Online Platforms
    World AIDS Day is observed on December 1 each year to raise awareness about HIV/AIDS, honor those who have died from the disease, and promote efforts to combat the epidemic.
  • Crohn’s and Colitis Awareness Week
    Crohn’s and Colitis Awareness Week
    Mon, 01 Dec
    01 Dec 2025, 00:00 – 07 Dec 2025, 23:50
    Online Platforms
    Crohn’s and Colitis Awareness Week is observed from December 1 to December 7 each year, aiming to educate about these common inflammatory bowel diseases and promote understanding and support.
  • National Grief Awareness Week
    National Grief Awareness Week
    Tue, 02 Dec
    Online Platforms
    02 Dec 2025, 00:00 – 08 Dec 2025, 23:50
    Online Platforms
    National Grief Awareness Week is observed annually from December 2nd to December 8th, aiming to raise awareness about grief and provide support for those affected by loss.
  • International Day of Persons with Disabilities
    International Day of Persons with Disabilities
    03 Dec 2025, 00:00 – 23:50
    Online Platforms
    The International Day of Persons with Disabilities is observed annually on December 3rd to promote the rights and well-being of persons with disabilities and to raise awareness about their situation in society.
  • Join our first annual Rare Year-End Engagement
    Join our first annual Rare Year-End Engagement
    10 Dec 2025, 19:00 – 20:00
    Microsoft Teams
    This year took a lot out of many of us. Before we jump into 2026 and start gearing up for Rare Disease Day, let’s share a moment together. We are not planning a big presentation, no heavy agenda. Just an honest check-in.
  • International Universal Health Coverage Day
    International Universal Health Coverage Day
    12 Dec 2025, 00:00 – 23:50
    Online Platforms
    International Universal Health Coverage Day aims to raise awareness of the need for strong and resilient health systems and universal health coverage with multi-stakeholder partners.
  • The Cape Town Cycle Tour - 2026
    The Cape Town Cycle Tour - 2026
    08 Mar 2026, 00:00 – 12:00
    Cape Town, Shop G13, Adderley St, Foreshore, Cape Town, 8001, South Africa
    Take on the iconic Cape Town Cycle Tour with purpose by joining #Ride4Rare. Experience breathtaking coastal views and the natural beauty of Cape Town’s world-famous route, all while using your passion and athletic ability to raise awareness and funds.
  • Totalsports Two Oceans Marathon - 2026
    Totalsports Two Oceans Marathon - 2026
    11 Apr 2026, 00:00 – 12 Apr 2026, 23:50
    Cape Town, 11 Main Rd, Newlands, Cape Town, 7700, South Africa
    Total Sports Two Oceans Marathon is an opportunity to use your mobility to benefit others - our rare diseases community! Sign up today to take part in the world's most beautiful marathon.

ACTIVities

Help us raise awareness and funds for our cause, our patients, and ultimately the rare disease community by registering to be a RARE ACTIVist.

Whether you participate in one of our featured events or a marathon, triathlon, or bike ride of your own, by fundraising for Rare Diseases South Africa NPC you’re helping us empower patients through improved advocacy, navigation and community engagement.​ 

#Run4Rare #Swim4Sadie or #Ride4Rare with our Rare ACTIVist team and use your mobility to the benefit of those without it.

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  • The Cape Town Cycle Tour - 2026
    The Cape Town Cycle Tour - 2026
    08 Mar 2026, 00:00 – 12:00
    Cape Town, Shop G13, Adderley St, Foreshore, Cape Town, 8001, South Africa
    Take on the iconic Cape Town Cycle Tour with purpose by joining #Ride4Rare. Experience breathtaking coastal views and the natural beauty of Cape Town’s world-famous route, all while using your passion and athletic ability to raise awareness and funds.
  • Totalsports Two Oceans Marathon - 2026
    Totalsports Two Oceans Marathon - 2026
    11 Apr 2026, 00:00 – 12 Apr 2026, 23:50
    Cape Town, 11 Main Rd, Newlands, Cape Town, 7700, South Africa
    Total Sports Two Oceans Marathon is an opportunity to use your mobility to benefit others - our rare diseases community! Sign up today to take part in the world's most beautiful marathon.

community events

Rare Diseases SA frequently hosts events in support of various conditions and or rare disease related causes. Contact us or follow us on Facebook for regular updates. 

  • World AIDS Day
    World AIDS Day
    Mon, 01 Dec
    Online Platforms
    01 Dec 2025, 00:00 – 23:50
    Online Platforms
    World AIDS Day is observed on December 1 each year to raise awareness about HIV/AIDS, honor those who have died from the disease, and promote efforts to combat the epidemic.
  • Crohn’s and Colitis Awareness Week
    Crohn’s and Colitis Awareness Week
    Mon, 01 Dec
    01 Dec 2025, 00:00 – 07 Dec 2025, 23:50
    Online Platforms
    Crohn’s and Colitis Awareness Week is observed from December 1 to December 7 each year, aiming to educate about these common inflammatory bowel diseases and promote understanding and support.
  • National Grief Awareness Week
    National Grief Awareness Week
    Tue, 02 Dec
    Online Platforms
    02 Dec 2025, 00:00 – 08 Dec 2025, 23:50
    Online Platforms
    National Grief Awareness Week is observed annually from December 2nd to December 8th, aiming to raise awareness about grief and provide support for those affected by loss.
  • International Day of Persons with Disabilities
    International Day of Persons with Disabilities
    03 Dec 2025, 00:00 – 23:50
    Online Platforms
    The International Day of Persons with Disabilities is observed annually on December 3rd to promote the rights and well-being of persons with disabilities and to raise awareness about their situation in society.
  • Join our first annual Rare Year-End Engagement
    Join our first annual Rare Year-End Engagement
    10 Dec 2025, 19:00 – 20:00
    Microsoft Teams
    This year took a lot out of many of us. Before we jump into 2026 and start gearing up for Rare Disease Day, let’s share a moment together. We are not planning a big presentation, no heavy agenda. Just an honest check-in.
  • International Universal Health Coverage Day
    International Universal Health Coverage Day
    12 Dec 2025, 00:00 – 23:50
    Online Platforms
    International Universal Health Coverage Day aims to raise awareness of the need for strong and resilient health systems and universal health coverage with multi-stakeholder partners.
  • The Cape Town Cycle Tour - 2026
    The Cape Town Cycle Tour - 2026
    08 Mar 2026, 00:00 – 12:00
    Cape Town, Shop G13, Adderley St, Foreshore, Cape Town, 8001, South Africa
    Take on the iconic Cape Town Cycle Tour with purpose by joining #Ride4Rare. Experience breathtaking coastal views and the natural beauty of Cape Town’s world-famous route, all while using your passion and athletic ability to raise awareness and funds.
  • Totalsports Two Oceans Marathon - 2026
    Totalsports Two Oceans Marathon - 2026
    11 Apr 2026, 00:00 – 12 Apr 2026, 23:50
    Cape Town, 11 Main Rd, Newlands, Cape Town, 7700, South Africa
    Total Sports Two Oceans Marathon is an opportunity to use your mobility to benefit others - our rare diseases community! Sign up today to take part in the world's most beautiful marathon.

webinars

RDSA-Webinars.gif

We regularly partner with various organisations, brands and specialists who are able to provide insightful content and informative feedback on relevant issues, conditions, treatment and regulation changes which may be of interest.

 

Register for an upcoming webinar below, follow our Facebook page for updates and webinar details or enquire about hosting a webinar of your own with us. 

No events at the moment

conferences

Rare Diseases SA not only hosts conferences (including RareX) but regularly participates in, facilitates and partners in a number of relevant conferences and exhibitions around the world. 

No events at the moment

awareness months

Awareness months serve to draw attention to and create awareness of illnesses and conditions.

 

With more than 7000 known rare diseases there are a significant number of awareness days throughout the year. If you feel we have missed one, please let us know.

upcoming awareness months

  • World AIDS Day
    World AIDS Day
    Mon, 01 Dec
    Online Platforms
    01 Dec 2025, 00:00 – 23:50
    Online Platforms
    World AIDS Day is observed on December 1 each year to raise awareness about HIV/AIDS, honor those who have died from the disease, and promote efforts to combat the epidemic.
  • Crohn’s and Colitis Awareness Week
    Crohn’s and Colitis Awareness Week
    Mon, 01 Dec
    01 Dec 2025, 00:00 – 07 Dec 2025, 23:50
    Online Platforms
    Crohn’s and Colitis Awareness Week is observed from December 1 to December 7 each year, aiming to educate about these common inflammatory bowel diseases and promote understanding and support.
  • National Grief Awareness Week
    National Grief Awareness Week
    Tue, 02 Dec
    Online Platforms
    02 Dec 2025, 00:00 – 08 Dec 2025, 23:50
    Online Platforms
    National Grief Awareness Week is observed annually from December 2nd to December 8th, aiming to raise awareness about grief and provide support for those affected by loss.
  • International Day of Persons with Disabilities
    International Day of Persons with Disabilities
    03 Dec 2025, 00:00 – 23:50
    Online Platforms
    The International Day of Persons with Disabilities is observed annually on December 3rd to promote the rights and well-being of persons with disabilities and to raise awareness about their situation in society.
  • Join our first annual Rare Year-End Engagement
    Join our first annual Rare Year-End Engagement
    10 Dec 2025, 19:00 – 20:00
    Microsoft Teams
    This year took a lot out of many of us. Before we jump into 2026 and start gearing up for Rare Disease Day, let’s share a moment together. We are not planning a big presentation, no heavy agenda. Just an honest check-in.
  • International Universal Health Coverage Day
    International Universal Health Coverage Day
    12 Dec 2025, 00:00 – 23:50
    Online Platforms
    International Universal Health Coverage Day aims to raise awareness of the need for strong and resilient health systems and universal health coverage with multi-stakeholder partners.
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Physical Address

The Station, 63 Peter Place, Bryanston, Sandton, 2021

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NPO: 120-991 

NPC: 2016/071131/08 

PBO: 930060119

©2025  Rare Diseases South Africa NPC

Rights reserved

RDSA Privacy Policy 

Rare Diseases South Africa

NPO 120-991

The Station, 63 Peter Place, Bryanston, Sandton, 2021

(“the Organisation”)

 

MANUAL PREPARED IN ACCORDANCE WITH SECTION 51 OF THE PROMOTION OF ACCESS TO INFORMATION ACT NO. 2 OF 2000

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